The trip to Fiji for an Australian family turned into a living nightmare when their daughter’s blister turned into an infection and inflamed her foot. With a rare and crippling disorder, Bella Macey, 10, experiences agonising pain in her entire right leg whenever she moves or even when someone touches it. After returning from the trip, the little Melbourne girl was diagnosed with complex regional pain syndrome (CRPS), frequently referred to as the “most painful condition” ever to exist. Macey rated her pain a constant “10” out of 10 in an interview with A Current Affair. She explained, “It’s all sharp, it’s burning, it’s tingly, it’s all sore. It’s different pain [that] I never knew was possible.” Her condition has caused her to become hypersensitive, making even the slightest contact excruciatingly painful. She finds even the most basic duties unbearable. “I can’t have a shower, I can’t have a bath…even with a tissue, you can’t touch it with anything, otherwise I will scream,” she said. According to the GoFundMe campaign, since her diagnosis, she has been battling excruciating pain that affects her daily activities and steals away her childhood. Bella’s pain has meant she has lost mobility in her right foot and leg, right up to her groin. She is now bedridden or in a wheelchair if she needs to get around.” So, what is this most painful disorder and what are its symptoms? How complex is it, how it can be treated? Let’s take a closer look. Also read: What is the Guillain-Barré Syndrome, the rare disorder that has forced Peru to declare national emergency? What is CRPS? Numerous people all around the world suffer from the crippling disorder known as complex regional pain syndrome (CRPS), which produces severe discomfort that is difficult to relieve. The National Institute of Neurological Disorders and Stroke (NINDS) describes it as a broad term describing excess and prolonged pain and inflammation that follows an injury to an arm or leg. According to Moneycontrol, it typically only affects one arm or leg after an initial injury, such as a fracture or sprain with no nerve damage or limb nerve loss. The body’s response is far more intense than usual, and it frequently results in agony that is worse than the damage itself. Acute (recent, brief-term) and chronic (lasting more than six months) versions of CRPS exist. Also read: PM Modi launches National Sickle Cell Anaemia Elimination Mission: What is this genetic disorder? What causes CRPS? Although the exact cause of CRPS is a mystery, it is believed to be brought on by more sensitive nerves in the affected location, which could alter the way that pain is sent from the leg to the brain, reported Dailymail. A stroke or multiple procedures on the limb rarely can be the culprit. There is no apparent cause in one out of every ten instances. Everyone, even children, is susceptible to CRPS. According to Delhi’s Pain Management Centre, estimates suggest CRPS occurs in 26.2 out of every 100,000 people. Women are more likely than men to experience it, as per UK-based National Health Services. The precise number of CRPS cases is unknown, however, Dailymail cited research saying that up to 3,800 people in the UK experience a yearly occurrence. And every year, between 5.5 and 26.2 Americans per 100,000 experience CRPS. Also read: Jo Lindner spoke of rippling muscle disease before death: What is it? What are its symptoms? The primary symptom is pain, which may be stabbing, searing, stinging, or throbbing. The affected limb is typically painfully sensitive to touch, bumps, and temperature changes. Additionally, CRPS can result in oedema, which can cause stiffness, limb weakness, and jerky movements. Additionally, joints may seem warmer or redder than usual. Many CRPS patients experience anxiety or depression. According to NHS, further symptoms include tremors and muscular spasms, trouble sleeping, changes to the hair and nails, and more. Also read: 101 million Indians are likely diabetic: Why the silent-killing disease is on an alarming rise How complex is it? There is no precise test that can determine CRPS and the damaged nerve. According to NINDS, early in the course of the condition is when the diagnosis is easier. Diagnosis includes a detailed examination by a neurologist, orthopedist, or plastic surgeon familiar with normal patterns of sensory nerve anatomy. The The medical trial health authority says nerve conduction studies can detect some but not all CRPS-associated nerve injuries as some injuries involve tiny nerve branches of that cannot be detected this way. Other methods include diagnostic imaging of your nerves by ultrasound or magnetic resonance imaging (MRI), and triple-phase bone scans. Also read: Fatima Sana Shaikh opens up about her epilepsy struggles: What is the chronic neurological disorder? How can it be treated? Unfortunately, there is no one-size-fits-all cure for CRPS. Through pain treatment and rehabilitation, therapies work to keep patients moving. This could involve medication, graded motor imagery, occupational therapy, physical therapy, and other coping mechanisms. Former therapies that are now rarely utilised include amputating the troublesome lower limb and sympathetic nerve blocks, surgical sympathectomy, and cutting affected nerves or nerve roots. With inputs from agencies
Bella Macey, 10, from Australia, was diagnosed with complex regional pain syndrome (CRPS), known as the ‘most painful condition’ ever to exist. The rare disorder, which has no cure, causes her extreme pain in her right leg even when she touches it
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